Javascript is not enabled! Please turn on Javascript to use this site.
Jeans for Jada

Jeans for Jada

Personal message

 

Jada-Ann is one incredible little girl from Johannesburg, South Africa, aged 8, who was diagnosed in 2012 with a terminal illness, Vanishing White Matter Disease, a rare and degenerative brain disease. There is currently no cure or treatment for this awful illness and it is degenerative.

Jada is losing her basic motor skills and is unable to run around unlike any other 8 year old, she now has to use a wheelchair for assistance. This disease has already robbed her basic motor skills, the ability to walk, run and play like other children her age, eat and drink or go to the toilet unassisted. Without treatment or a cure, her abilities will only degenerate and get worse: loss of vision, epileptic seizures, vomiting, irritability, loss of bowel control, inability to move, depressed consciousness, comas and ultimately die.

The average life expectancy of VWM patients is 5-10 years from the onset of the disease, few sufferers survive past this given period and there are only two that we are aware of worldwide. We really are in a race against time to find a cure and save her life.

Why the race against time to raise funds you ask?

Jada could get a cold, she could fall…. Just one sneeze could lead to pneumonia, just one small bump to the head could put her in a coma, and that one small action could happen in a split second… and we could lose her forever, sadly time is something she doesn’t have in her life.

ABOUT VANISHING WHITE MATTER DISEASE:

Vanishing White Matter disease (VWM), also known as Childhood Ataxia with Central Nervous System Hypomyelination (CACH), is a neurological condition that destroys myelin, the brain’s white matter. In doing so, it permanently affects the transmission of brain signals to the rest of the body. This myelin acts as electrical insulation, allowing the messages to pass quickly from place to place. The loss of myelin essentially means that Jada’s brain is dying and in doing so she slowly loses the ability to send signals to the rest of her body, and the signals that do get through are often slower than normal or don’t get there at all.

VWM is one of about 40 conditions that affect the white matter of the brain known collectively as Leukodystrophies. It is extremely rare, there are only 3 known cases in South Africa and 172 people worldwide who are known to suffer from the disease.

VWM is chronic and progressive and often manifests in periods of rapid and severe deterioration caused by minor head trauma, fevers, and even anesthesia.

Symptoms generally appear in young children (usually between 2 – 6 years old) who were previously developing fairly normally and when the disease advances they start to lose their abilities.

The severity of the disease is strongly correlated to the age of onset. While every patient is different, as the disease progresses, sufferers can expect some or all or the following symptoms:

  • Loss of motor skills (walking usually goes first, followed by the ability to sit unassisted, speech, use of hands, head control and ability to swallow)

  • Loss of vision

  • Sudden uncoordinated muscle movement (cerebella ataxia)

  • Abnormal muscle stiffness (spasticity)

  • Difficulty walking or standing unaided

  • Damage to optic nerve

  • Delayed development

  • Possible deterioration of mental functioning

  • Epileptic seizures, vomiting, irritability, and comas

 

WHAT CAUSES VWM?

VWM is a recessive genetic disease, which means that both parents carry a mutation on the same gene that has been inherited by their child.

Each parent mutation is different, so each child has a unique pair of mutations. The combination of these 2 mutations determines the severity of the disease (for Jada, we know that Bruce’s mutation is a mild one and mine is severe). For this reason, the severity of the disease is completely individual, depending on the combination of mutations that each child has. It also means we can share symptoms with other families but have no way of comparing how quickly the disease will progress in our daughter. For this reason, as well, it is impossible with current technology to do across the board prenatal screening for VWM.

FIND A CURE:

As VWM is so rare, there is no financial incentive for pharmaceutical companies to research and develop a cure, so, unfortunately, there is minimal funding available to continue research.

The only way research can continue and progress is through funding from families affected by these diseases. Which is not many. It is critical that we are able to encourage and support ongoing research through fundraising initiatives.

We are aware of two primary research projects that are focused on VWM. They are led by Dr. Marjo S. van der Knaap at VU University Medical Centre, and Dr. Orna Elroy-Stein at Tel Aviv University.

We are appreciative of the progress that they are making and remain hopeful for treatment and a cure.

An Australian research team, Illawarra Health, and Medical Research Institute, which are being funded by an affected family (saving Chloe Saxby) will begin investigating Vanishing White Matter Disease. Up until now, our only hope came from research being conducted in Israel and the Netherlands, and now we will have leading Stem cell researchers speeding up the process.

Due to the advancements of stem cell treatments in treating some of these neurological diseases, we have decided to take the control back into our hands. It is our vision to put a team of world-renowned specialists together and get them to start working on a cure. This is happening with a first of a kind research conference geared at exclusively working on a cure for this disease.





Donations

  • Jul 20, 2019 - USD $ 15.13
  • "In our thoughts " - Anon

  • Jul 20, 2019 - R 514.10
  • "Princess Jada stay strong " - Connie Shipp

  • Jul 20, 2019 - R 102.82
  • "God be with you" - Anonymous

  • Jul 20, 2019 - USD $ 37.82
  • "Get better." - Chris

  • Jul 19, 2019 - R 308.46
  • "Love and hugs to Jada and Kim " - Marion

  • Jul 19, 2019 - R 205.64
  • "Sending love " - Tracey Fourie

  • Jul 19, 2019 - R 205.64
  • "Get well soon Jada" - Sandra

  • Jul 19, 2019 - R 205.64
  • "May God bless you" - Antoinette Pombo

  • Jul 19, 2019 - R 110.00
  • "Stay Strong" - Lea Pitt

  • Jul 19, 2019 - R 514.10
  • "Get well soon Jada, praying for you. " - Therese Cross

  • Jul 19, 2019 - USD $ 7.57
  • "Praying for you all Jada you are so brave! Kim you are an incredible mom. " - Anonymous

  • Jul 19, 2019 - R 205.64
  • "Praying and sending lots of love" - Charlie, Brendan & Brayden

  • Jul 19, 2019 - USD $ 72.05
  • "We love you Jada!" - Simone, Tina, Nicole, Carol, Giulia

  • Jul 19, 2019 - USD $ 15.16
  • "All the best <3" - Darren Bester

  • Jul 19, 2019 - R 300.00
  • "Thinking and praying for special Jada xxx " - Jenna and Greg Sinnett

  • Jul 19, 2019 - R 205.64
  • "Sending so much love and strength to such an amazing mommy ??" - Laura Harvey

  • Jul 19, 2019 - R 51.41
  • "Get well soon Jada! " - Sabina

  • Jul 19, 2019 - R 205.64
  • "Sending such love and strength " - Sarah Harris

  • Jul 18, 2019 - USD $ 21.04
  • "Sending hugs to Jade, Bruce and family " - Mel Wilkins

  • Jul 18, 2019 - R 1 028.20
  • "Sending Jada and Kimmi lots of love!" - Teixeira Family

  • Jul 18, 2019 - USD $ 107.39
  • "Thinking and praying for you and Jada" - Jayde

  • Jul 18, 2019 - R 210.00
  • "Strength to Jada and the family. " - Toni Heger

  • Jul 18, 2019 - R 514.10
  • "Keep fighting precious angel ??" - Diana

  • Jul 18, 2019 - USD $ 25.00
  • "We are praying for you all xxx strength to you Kim xx" - Britnor family

  • Jul 17, 2019 - R 1 000.00
  • "We love you baby girl" - Atanya and Rodger du Plessis

  • Jul 17, 2019 - USD $ 75.85
  • "Saying our prayers! X" - Anonymous

  • Jul 17, 2019 - R 1 028.20
  • "Such innocent courage and strength! I'm in awe, Jada, and I can't wait to see your smile again some day soon! And that goes for you, too, Kimmie!" - James

  • Jul 09, 2019 - USD $ 500.86
  • "With wish you light and love and hope this helps" - Flo and fran

  • Jul 08, 2019 - R 500.00
  • "Big hug!! " - Andrea Rigamonti

  • Jun 11, 2019 - R 203.00
  • "?" - Atanya

  • Jun 04, 2019 - USD $ 10.52
  • "You are in our thoughts and Prayers." - Candice

  • Jun 03, 2019 - R 110.00
  • "Stay strong and keep fighting. Really hope a cure is found" - Bev

  • Jun 02, 2019 - R 203.00
  • "Keep fighting, Jada and Kim" - The Webbies

  • Jun 01, 2019 - R 514.10
  • "Sending you lots of love and wishing you a speedy recovery baby girl. Love Nev & Irina " - Paw Patrol Mobile Pet Grooming

  • Jun 01, 2019 - R 203.00
  • ""By His wounds Jada is healed" Isaiah 53:5" - The Van Oldies

  • Jun 01, 2019 - R 1 028.20
  • "All the best wishes and thoughts" - Anon

  • May 31, 2019 - R 1 015.00
  • "God heal this child " - Anon

  • May 30, 2019 - R 102.82
  • "Keep fighting Jada and the prayers of others will do the rest ???? love Lulu's sister xxx" - Kerri Drogan

  • May 30, 2019 - R 102.82
  • "You are in my thoughts and prayers Jada. Keep fighting beautiful! Love Lulu's Mom x" - Janette Drogan

  • May 29, 2019 - R 205.64
  • "Get well soon beautiful girl" - Danielle Djurdjevic

  • May 29, 2019 - R 203.00
  • "In our prayers precious little Jada. Stay strong mommy, she is lucky to have you xxx" - Nicole

  • May 29, 2019 - R 203.00
  • "Sending big hugs!!!" - Trace

  • May 28, 2019 - R 1 028.20
  • "Keep fighting little earth angel. Sending love. " - Dani & Lia

  • May 28, 2019 - R 203.00
  • "Keep strong Jada x" - Anonymous

  • May 28, 2019 - R 100.00
  • "Love and energy!! " - Anonymous

  • May 28, 2019 - R 102.82
  • "Jesus is with you always-Take comfort in that????" - Anonymous

  • Feb 28, 2019 - R 200.00
  • "Beautiful girl!! " - annonymous

Donate to this charity

Statistics

Donations to date

R 25 631.24

Fundraising target

R 20 000.00
Donate

Jeans for Jada Cause

Jeans for Jada Cause Logo

I have a friend who is mother to a beautiful little girl called Jada battling a terminal disease called vanishing white matter. She is raising money in the hopes of sourcing a cure.

Help spread the word:

Share this campaign!